Through a glass, darkly

Okay, time to move the post about my GI issues down a bit!  :)

As I went online to make my dutiful (doody-full?) post about some recent side-effects, I checked out the updates on a couple of Myeloma blogs I follow.  One belongs to my friend Pat Killingsworth, who has taken a much more cautionary approach in his treatment than have I.  I encourage people to read Pat's blog as it is a good counterpart to the more aggressive therapeutic route I have chosen and it gives people an idea of the range of options out there.  Although I will ruefully admit that I stumbled upon Pat's blog when I was in the middle of treatment getting a blood transfusion and on that day, he happened to list the 10 reasons why you should never get a blood transfusion (I'm using some artistic license here) and I used this as a springboard to rant a bit about treatment philosophy at that time!  :)  

Anyhow, Pat is tirelessly dedicated to getting the word out there about all things Myeloma and while I have a markedly different point of view in terms of how aggressive to be, I have a tremendous respect and appreciation for Pat's energy and tireless dedication to get as much information out there as possible.  With this in mind, I read with excitement his recent post that references an article talking about the effectiveness of maintenance therapy. 

The article, which can be found on Pat's blog here, is titled "Post Stem Cell Transplant Maintenance Therapy Delays Multiple Myeloma Relapse in a Majority of Patients."  A subtitle is that Revlimid in maintenance cuts relapse rates in half.

Pat and I draw somewhat different conclusions from this, but I view it as part of a puzzle being validated bit by bit.  And we're getting to the reason for my Corinthian post title.  The puzzle is completed for the majority of newly diagnosed patients but only a few people are looking at it in its totality.  Other researchers are looking at bits and pieces of the puzzle without seeing the synergy the pieces have together.  They are looking through darkened glass, unable to have the clarity of everything working together.

My diagnosing hematologist, SH, in November 2008 had the following things to say:
- "I don't believe in maintenance therapy"
- "We don't use Revlimid, that's saved for relapsed patients"
- "We [including MAYO and City of Hope] save Velcade for way down the line"
- "I do suggest stem cell transplants so you can be off drugs, but they do not prolong life"

Thankfully he also said I should look at the full spectrum of options including BB (whose last name, incidentally, he mistakenly contorted into an Italian version of its actual Germanic root) and I am immensely thankful that he was open-minded enough to tell me there were different points of view which is the SINGLE most valuable thing a newly diagnosed patient needs to know, and which is part of the bond that ties Pat's blog and mine together despite their very different approaches to treatment. 

At any rate, let's look first at the different treatment philosophies accompanying these statements.


1.  Maintenance therapy:

SH position in November 2008: "I don't believe in maintenance therapy."

BB position in November 2008 (and much earlier): Maintenance therapy is essential post transplant.  Without it the Myeloma is all but certain to return; with it there is a high likelihood of cure in the 85% of newly diagnosed patients that are low-risk.

Current research: prolonged remission arises from maintenance therapy.  Excluding Arkansas, the data set does not exist to prove or disprove any connection to event-free survival.  Yet. 


2. Revlimid

SH position, November 2008:  "I don't use Revlimid in new patients, I save it for relapse."

BB position, November 2008:  Revlimid is a part of treatment for newly diagnosed patients because of its superior anti-Myeloma effects and better tolerability than Thalidomide, which was the standard Immuno-Modulatory drug in Myeloma therapy prior to Revlimid.  However, Revlimid is NOT used prior to transplant both because (1) it suppresses platelet recovery which would make the time to recovery from transplants much longer, and (2) it represents yet another type of therapy to which the Myeloma will not have been previous exposed (and to which drug resistance will have been developed) and therefore enhances the effectiveness of treatment if used after Thalidomide.

Current research: most mainline therapy now uses Revlimid in newly-diagnosed patients...a position that was so novel at the time of my diagnosis that Dr. SF at City of Hope used me as a test case to open a debate amongst his peers about whether or not to use Revlimid in newly-diagnosed cases.  What current research seems to be missing, though, is this platelet issue -- to which my own labs attest.  Part of it is, though, that extended Thalidomide can be pretty nasty.  For this reason, and because of drug resistance, BB does at most two cycles of induction for low-risk patients plus some treatment during transplants and some consolidation -- compare that with induction elsewhere which is usually a year or longer!! 


3.  Velcade

SH position, November 2008:  "We save Velcade for way down the line."

BB position, November 2008:  "Velcade is a game changer and increases the cure rate of newly diagnosed patients (including high-risk) from about 40% to over 60%.  It is a critical part of all phases of therapy for the newly diagnosed patient."

Current research: under investigation, but whereas it was almost unheard of for people to use Velcade as frontline therapy, now there are a multitude of trials doing just that.


4.  Stem Cell Transplants

SH position, November 2008:  "They don't prolong life."

BB position, November 2008:  "They cure the majority of cases."

Current research: the jury is out.  No data outside Arkansas exists to show the impact; Arkansas' data shows it pretty clearly but others either don't believe the data or have other issues with it.  I believe this will be the last piece of the puzzle that others eventually prove out -- but it may not happen before something else better comes along.


You can see where I am going with this: researchers outside UAMS are seeing pieces of the puzzle, but not seeing the whole thing.  Maintenance, in isolation without the therapy that precedes it, is shown to prolong remission.  Great.  But that's missing the fact the maintenance, as part of Total Therapy, is curative in the majority of cases.  Revlimid, in isolation without the therapy that surrounds it, is more effective than Thalidomide -- but they, too, are only seeing part of the situation.  Velcade, same deal. 

All of these, though, are being proven out by research.

As I said above, my guess is tandem transplants will be the last thing to be proven out -- and hopefully by the time BB will have been put out of business by a new novel drug.

That is one thing that Pat and I both fervently hope for -- and I think BB won't mind the day when that happens either!

Sorry for the long post -- hope you got something of value from it.  If not, low-brow poop jokes are just a few mouse clicks away.

GI Chess -- not for the high-brow

If you know what this picture is from, then you can guess what this post is going to be about.

I have remarked before that this is not a dignified disease.

I have also remarked that if this blog is of value, it is in large part because of unflinching honesty.  One of the most fearful things about undergoing Myeloma treatment is the unknown.  So whether it's the uncomfortable reality of diagnoses, the uncomfortable reality of treatment, the uncomfortable reality of side-effects, etc. I hope that by faithfully reporting what happens to me, others who are undergoing treatment or considering it can at least know what they can expect might happen.

Which brings me to this post.  I type this knowing I'm going to have another post shortly therafter so at least this won't be at the top of my page for long!

By the way, folks, thank you very much for the active comments re: supplements on the last post.  If I asked my doctor here about them, he would say "ask Arkansas" so I will probably call BJ this week.  I have discontinued Milk Thistle.  I still take this liver.52 product which does seem to have brought down AST so it is having a positive effect but I will cover it off with BJ as this seems the prudent thing to do.  I don't want any side effects!

Now...speaking of side-effects...

My GI tract has been in a state of war kind of like the Korean peninsula.  I modulate Senna to keep an uneasy truce between the white pieces (constipation) and the black pieces (you can guess).  Most matches are played to a draw.

On the white side, we have Revlimid (both individually and particularly when combined with Dex).  On the black side we have Velcade, Magnesium supplements, the impact of Augmentin (strong antibiotic I am currently taking to get rid of chest cold #7 since maintenance therapy began), and potentially the chest cold itself.  Actually I think Velcade plays both sides at times.

For the last five days now, the black pieces are beating the living daylights out of the white pieces.  There is one white king desperately shifting around while about six queens are zipping about him.

Two oft-quoted pieces of research about diarrhea: (1) it is hereditary (it runs in the genes) and (2) while some people think it's funny, it's really....well.  Anyhow, a third observation is that after five days it's starting to get very old.  I am not yet taking Immodium because I took Dex last night and figured the natural advantage that gives to the White side of the board will kick in and if there's one thing I've learned in this process, it's about the dangers of over-steering.  In fact this five day binge kicked in because I overdid Senna last week.   But if things don't get settled down in the next 48 hours, I'll be on Immodium rapidly.

Meanwhile I'm drinking plenty of water.

I have another important post to make that I had hoped would bump this one down a couple of notches.  But sadly I have to run to a breakfast meeting -- so this one will be here for a bit, in all its glory.

I'm not going to embed the video, but for those that saw the photo above and are pining for some toilet humor, the scene you are looking for is here:

http://www.youtube.com/watch?v=wbDiujuv6rQ

Milk thistle -- hold the thistles please!

First, the second half of my return from Orlando story.  To make a long story short, I am learning that spicy food of certain types do not sit well on Thursdays given Velcade.  I had some Mexican in the Orlando airport and spent the first hour of the flight uncomfortable, the second hour very uncomfortable, and the next 15 minutes throwing up in the toilet at the back of the plane.  After which I felt considerably better.

Things are going well.  I am noticing that constipation requires earlier action.  My cadence was one senna pill on Wednesday evenings and maybe on on Thursday mornings.  I have found now that Tuesday night, Wednesday morning and Wednesday night are required.  May take one more tonight.  I'm not sure if it gets worse as I take more Revlimid during a given cycle but I have five more pills to go on this one.

Otherwise things are good!

Now here is a chance for you lurking homeopaths (those that I haven't scared away by my complete embrace of deadly chemicals) to chime in.  I didn't lose and regain my tastebuds two separate times to never enjoy wine again.  In fact I enjoy it quite a bit.  Plus my liver is lightly taxed by my lipitor.  There are four liver markers -- two are always fine, one is usually fine, and the fourth is consistently a little high.  I have been taking liver.52 which I get from Amazon and that brought the third marker well into the normal range, but the fourth marker -- ALT which is the short-term enzymatic response to lipitor and alcohol, is still around 100 when it should be more like 70.  These are not catastrophic numbers and BB as well as my local oncologist GD say everything is fine (BB's one comment in dictation to my file last year was that "patient probably needs to drink more").  But just for kicks I bought some Milk Thistle which I've been told is good at helping out the ol' liver.

Well I took this for about three weeks and I noticed what I thought was bone pain in the lower right ribs -- which scared me at first because that's where one of my lesions was.  But it's actually a more dull pain and it's the liver!  So needless to say, I'm stopping the Milk Thistle.  I will look and see what's going on with the blood chemistry.  If it brought down the ALT I may continue with it on a smaller dose (I had been using the "management" dose of 8 capsules a day versus the "maintenance" dose of half that). 

Not the most exciting news, but it had been a while since my last post, so...

Notes from Orlando and MD Anderson

I just returned from a week in Orlando for my company's annual strategic offsite with our board of directors.

A couple of things of note.

First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.

MDA there is quite nice, reminded me a bit of City of Hope in some ways.  After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story.   She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off.  She left, and a few minutes later Dr. JH entered.

Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you.  He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well.  He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma.  Hello....2003 called, they want the concept back!

Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc. 

They had the freezing spray, which made insertion of the needle in the port a snap.  They drew blood, I sat back and did some work.  The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc.  I was in the place from 7:30AM to 1:30PM.    Between that and the cab time back and forth, it was a good 7 hours.

Nonetheless, Velcade administered, and I get on with my life.  I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.

Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime.  Among them, Ambien.  Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.

I then proceed to stare at the ceiling all night.  There's no worse feeling than knowing you have to sleep and being unable to sleep.  I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow).  So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep.  But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.

That's when the downside of staying "on property" (as well call it) became apparent.  The kids in the room next door started shrieking at the top of their lungs.  Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT!  EPCOT!  EPCOT" unabated for two freakin' minutes is uncalled for.  Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!".  And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine.  After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen."  No such luck.  The superhuman kid just kept bellowing away.

I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.

At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed.  Followed by previously-silent father saying "now look what happened" to his screaming kids.

I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....

the Ambien.